Making our voices heard

In Bradford and Craven, where Katie Peacock lives, the life expectancy of a woman with a learning disability is 29 years less than for a woman who doesn’t have one – and for a man, it is 14 years less. “Very sadly, these shocking figures are in line with national statistics,” Katie notes.

Mark Hamblin, a self-advocate who represents other people with learning disabilities, recalls the death of a friend who used to help at Scarborough Hospital. “He had learning disabilities; he was only 57, was healthy and fit, used to walk and cycle all over the place, and he suddenly dropped down dead of a heart attack on a service bus. He probably didn’t know he had heart problems. He had just left work at the hospital that day,” Mark says.

‘Staying healthy’ is one of the four themes of the work plan the pair oversee, as Co-Chairs of the North Yorkshire Learning Disability Partnership Board, and their passion for making life better for people with learning disabilities is infectious.

“We take issues further for people with learning disabilities. Some people are not as good at speaking up for themselves, so I represent them,” says Mark.

Katie talks about how Mark inspires people around him to do their best: “To know I’m working with somebody who is equally passionate about the rights of people with learning disabilities and their families, and them having good lives, makes me feel I’m doing a good job.”

One of the areas that has improved – and where the board has undertaken a lot of work – is the accessibility of health (and other) information. All providers of publicly funded health, adult social care and public health services have been legally required to follow NHS England’s ‘Accessible information standard’ since August 2016.

“There are still a lot of people who are not well looked after with their health, and this is one of the things that drives us with our work with the partnership board – it has real meaning,” says Katie.

Mark has had experience of the struggle to get the right help at his own doctor’s surgery. “I’ve been very bad with my diabetes and my blood sugar levels, but now I’m getting more help because we’ve got two new people that work at our doctor’s – a learning disability nurse and a support worker,” he says.

“Still a lot of people are not well looked after with their health”

“I suffer a lot of bad panic attacks, feeling like I’m going to die at any minute. But now, I do feel a bit better, because if I need to see somebody, they can get me the right help.”

Housing is another area in which more could be done to improve the lives of people with learning disabilities, the pair feel.

Katie talks about the importance of “really good”, but also “ordinary”, housing – so people can live in their own community on an “ordinary” street, rather than, for example, in a supported living scheme, if that’s their preference.

Mark and his wife, Amanda, live in a flat, but want to move to a bungalow.

“We don’t like living in the flat where we are; we have noisy neighbours who come in and out, bang the doors, stuff like that. It’s not a very good street, because there’s no parking for our friends and carers who come in their cars to see us. 

“We want to get out of this place because it gets us down sometimes; you get depressed living here. We want somewhere with a garden, somewhere nice.”

Both are pleased to see the increase in the number of ‘Changing Places’ – larger public toilets with extra space and equipment, such as hoists, that allow people with a disability to use toilets safely and comfortably. But they want to see more, and flag continuing issues of accessibility –  such as in leisure centres, where facilities “aren’t as accessible as the managers might think”, because, for example, there isn’t enough room to move around with a wheelchair present.

“So many people’s lives are restricted because they can’t go out for a day as they need to use the loo – and if there’s not an accessible loo, they can’t go out,” says Katie.

“It stops people getting out there and being part of their community, and living that ordinary life we are passionate about.”

The partnership board has not met in full during the pandemic, but work has continued, and various sub-groups and self-advocacy consulting groups have continued to meet over Zoom.

“It makes a lot of difference if all the information from the self-advocacy groups is taken to the partnership board meetings and issues are raised and we talk about how to make them better,” says Mark.

For him, making sure the voices of people with learning disabilities are heard and listened to by councils and other organisations is the key to improving their lives.

“They should listen to people with learning disabilities and give them all opportunities to speak up.”

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